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“We don’t have a word for how bad it has been”

Dementia sufferers during the pandemic, by John Rafferty

Dr Peter Garlick was a family doctor in Herefordshire in England for 32 years. During this time he cared for many people with dementia and their families. His life has now been touched by personal experience of the condition.

Dr Javier Ayape has been a family doctor for over 20 years in the Spanish city of Santiago de Compostela. Through his large city practice he has much experience of the needs of those suffering from dementia and those who care for them.

Sra. Mari Carmen Vázquez lives in Málaga in Southern Spain where she cares for her 65 year old husband Pedro, who has been suffering from early-onset dementia for 10 years.

These three people have never met. Yet, when asked about the experience of dementia sufferers through the pandemic they use the same words to express their profound concern at the situation, their frustration with the lack of organisation and resources and their demands for a better service in future.

Dr Ayape spoke first about the number of people suffering from one of the forms of dementia. Alzheimer’s disease is the most common and both the Spanish organisation, the Confederación Española de Alzheimer and the UK Alzheimer’s Society are in agreement that around 1 in every 14 of people over the age of 65 have dementia. That’s over 800,000 people in both the UK and Spain. “But” says Dr Javier Ayape, “for every person with dementia practically every other member of their family, particularly the caregivers, are affected.”

Dr Garlick agrees and he traces his own experience as a family doctor over the last 40 years. “I was involved in the change in dementia care from a hospital-based care system to a community-based one, whilst the large mental hospitals were being closed, replaced by local units, which did not have long stay beds for dementia patients. Initially the community service was supported by properly trained psychiatric nurses but sadly this system has been eroded, replaced by unqualified care assistants. There is this assumption that dementia is purely a social problem so governments have not supported the care, as they do with other medical conditions. This is particularly obvious in residential homes that care for a large proportion of dementia patients. The staff, although very willing, have little training and in my recent family experience, do not understand the process of dementia. On the positive side, there has been a lot of work on dementia awareness in the community, with education packages for voluntary organisations. In recent times there has been a shift towards earlier diagnosis of dementia, so that families can make better plans, but sadly there have been no great breakthroughs in the treatment of dementia.”

Señora Vázquez speaks with the conviction of someone who lives with these issues. “In the beginning the symptoms were barely noticeable. Pedro was young. But then they accelerated, It was frightening for him and for the family. Now he needs full time care. The family rallied round, of course, and he attended a very good day centre for a while. Then came the pandemic which affected us all.”

On the subject of the effect of the pandemic the voluntary organisations have been vociferous in pointing out the escalation in the number of deaths, particularly amongst older people with dementia. And when talking about the last two years in their lives Sra. Vázquez and Drs Garlick and Ayape speak with one voice as they recount the significant effects on dementia care for sufferers and families. The closure of day centres, clubs and relief care in residential homes. The inadequacy of virtual services which do not give the same contact. Access to assessment clinics has been reduced. Isolation due to shielding and lockdowns has almost certainly caused deterioration in early dementia. In residential homes that isolation was most acute.

All three, in their own words, call for a radical review of government funding of services for those suffering from dementia and their carers. The pandemic fractured the systems of care that were already under severe pressure from chronic underfunding and cutbacks.

Through all of the analysis and statistics, the depth of human suffering is impossible to quantify. Sra. Vazquez describes this is in the most poignant way, “We don’t have a word to describe the experience of the last two years adequately. Take the word tragedia add it to the word catástrofe and multiply many times over, and that might begin to describe what has happened to us and people like us.” However, she also describes the way in which her neighbours rallied round, young people in the barrio went shopping,the farmacia, fish shop and butcher started delivery services. “It was as if the community made us a priority”, she said.

Drs Garlick and Ayape, Sra. Vázquez and legions of other carers, and every voluntary organisation providing services for the those suffering from dementia agree. Make services for dementia sufferers and their carers a national priority – and do it now.

John Rafferty lives in Santiago de Compostela and is the former Chairman of the Central Scotland Health Care NHS Trust and the South West London and Saint Georges Mental Health NHS Trust.

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